Last week Noreen and Wendy Brewin from the Sensory Trust returned from attending the 12th UK Dementia Congress at Doncaster Racecourse, home of the St Leger Festival. The three day conference, organised by the Journal of Dementia Care, was attended by over 700 delegates, and offered over 150 different presentations, interactive workshops, panel discussions, exhibitions and films. So we were indeed spoilt for choice! We can only give you a little flavour on what was going on at this not-to-be-missed event by sharing some pertinent themes that resonated with both of us.
#Theme 1: Harnessing and recognising the expertise of people with dementia
The overwhelming impression was that people living with dementia were at the very heart of this event. Right from the opening plenary session to the final question time panel, people living with dementia were respected, involved and participating. In the opening plenary session we heard from Shelagh Robinson, on behalf of the recently launched Three Nations Dementia Working Group.* Shelagh was diagnosed with dementia in 2011 and she cogently made the case for listening to the voice of those living with dementia – ‘nothing about us without us’. She pointedly reminded us that people with dementia are ‘modelling the reality of living with dementia’. Harnessing the expertise of people living with dementia was highlighted by Professor Murna Downs in her ‘Tom Kitwood Memorial Address’. One of her messages for researchers was that dementia research requires partnership – researchers cannot do research alone. She was clear that to make change in practice we need input from the people living with dementia and that if we do it properly it will be time-consuming.
#Theme 2: End of life care
The perspective of people living with dementia and their carers was very much at the forefront when we considered the very important topic of end of life care in the opening plenary session. People with dementia are amongst the least well supported at end of life and that there are still too many reported cases of poor care at end of life. We watched a film which captured the discussions between people with dementia, carers and professionals talking about death and dying. These discussions had been facilitated by Polly Kaiser from the Life Story Network. Then Rachel Litherland, from Innovations in Dementia, led a panel discussion in which several of the participants in the film – both people with dementia and carers – shared their reflections. This reinforced the importance of dignity, choices, listening, keeping doors of communication open and the right to plan for the end of life.
This was followed Dr Liz Sampson, speaking on what palliative care can offer people with dementia. She too recognised the need to talk about end of life care and by acknowledging it we honour the process. Palliative care is holistic care, meeting physical, psychological, social and spiritual needs, and this is powerfully conveyed by the Latin ‘palliare’ which means ‘to cloak’ or ‘encircle’. Liz Sampson outlined the challenges facing palliative care in dementia which include dementia not being recognised as a terminal illness, inequity of access and service provision, and lack of support for care homes from local health services. Hospice standard care should be the vision for end of life for people with dementia.
#Theme 3: Co-producing with people with dementia in the design and delivery of projects
With the Congress’s strong emphasis on quality of life for people living with dementia, many of the presentations highlighted the range and diversity of programmes and projects that have been developed and implemented to help people with dementia live well. Underlying many of these was the principle of co-production, i.e. working with people with dementia in the design and delivery of well being projects. We heard from Gill Roberts and Simon Bernstein, both from the charity, Alive!, on projects they have developed for care home residents – PaintPals, iPals and Parlours of Wonder; and from Professor Anthea Innes and Jana Haraglova, on the dementia Sensory Palaces Project at the Historic Royal Palaces. Co-production is not without its challenges, as discussed by Simon Bernstein, and include time investment and how best to elicit care home residents’ opinions. Linking practice and evidence was a feature of the presentations and we presented on ‘My Nature: a Training Toolkit’, showing how the development of the toolkit emerged from research evidence and was co-produced with care homes. The presentations in the session were complementary and stimulated an interesting discussion around the risks and benefits of care home residents accessing nature and the outdoors. It was great to have feedback on our work and meet others who believe in the importance of nature for well being.
#Some final thoughts and reflections
It’s almost impossible to sum up on such a full and diverse event but we will conclude with some thoughts and reflections…
- the importance of listening to the stories of people living with dementia and the work of Dementia Diaries, Life Story Network and Innovations in Dementia is impressive.
- the achievements of people with dementia is heartening and the publication of the Dementia Statements – ‘We have the right to…’- have been made by people with dementia and are testament to their right to live life to the full.
Wendy Mitchell concluded her excellent blog on #UKDC2017 with the suggestion that training to make tea would not be amiss at Doncaster Racecourse – we would extend this to include coffee. We so missed our Crankhouse Coffee!
* The Three Nations Dementia Working Group (the three nations being England, Wales and Northern Ireland) is supported by the Alzheimer’s Society and is the ‘go to’ if you need the voice of people with dementia and will have a guest spot on the Alzheimer’s Society website.